Just returned from PB

[dsmom]

Thanks Mac and Jodie for the words of encouragement! I will get on it soon- waiting to take our son for an EEG this afternoon- hopefully he will be able to get back to school next week and I will have more time to sit down and write!

 

[bellebud]

Thanks Mac and Jodie for the words of encouragement! I will get on it soon- waiting to take our son for an EEG this afternoon- hopefully he will be able to get back to school next week and I will have more time to sit down and write!

just wondering how your ds's eeg went. hope he didn't mind it too much.

 

[dsmom]

Thanks for asking! We are STILL waiting to get it done. The drs. are fighting it out about what kind of sedation to use- will let you know when we finally get it done. On a more positive note - we just returned from our birthday trip and it was perfect! I wrote out day one of the trip report - hit post and it was lost! I will try and re-post later today!

FYI bubba'smom- I ate no cheeseburgers on the trip.

 

[bubba's mom]

Thanks for asking! We are STILL waiting to get it done. The drs. are fighting it out about what kind of sedation to use- will let you know when we finally get it done. On a more positive note - we just returned from our birthday trip and it was perfect! I wrote out day one of the trip report - hit post and it was lost! I will try and re-post later today!

FYI bubba'smom- I ate no cheeseburgers on the trip.

good girl!!!!

Here's a secret to writing your TR....as you are going along, every so often, copy and paste your TR to your notepad...that way if it gets "lost", you have a backup....just go to your notepad, and copy and paste it in the DIS reply. With the length of MY TR's, I just don't take a chance of losing power, the boards or internet connection going down, DS accidentally "pulling the plug" on my laptop (or the battery dying )...so, maybe that will help!

 

[bellebud]

:

Here's a secret to writing your TR....as you are going along, every so often, copy and paste your TR to your notepad...[/COLOR][/SIZE]

or just write it to begin with in notepad or Word or something, then paste when you're done (right??? I believe that would work)

Thanks for asking! We are STILL waiting to get it done. The drs. are fighting it out about what kind of sedation to use- will let you know when we finally get it done.

if you don't mind my asking... how old is your ds and why is he having an EEG? (none of my beeswax of course - if you don't want to talk about it). I ask because my 7yo dd used to have seizures and we've been through a lot w/ her w/ hospitals, eegs, meds, etc, etc... that's actually why I started going to disney a lot. I told dh for every hospital trip she had, I wanted her to have a disney trip to make up for it (of course he rolled his eyes at me). Anyway, it always helped me to talk w/ or just know there were other parents out there going through similar stuff. Hope your ds is doing well!

OH, and thanks for your response on my thread about the kids and PBH!

 

[FeeFeeWhite]

Don't you just love that 100% occupancy but it still feels empty thing about PBH!

 

[dsmom]

Thanks for the advice Bubba'smom- I am working on it now!

Hi Bellebud! I don't mind you asking at all. Our son is 9 years old. He is pretty severely autistic and also has epilepsy. We have tried for YEARS to get an eeg done on him- too long a story to go into- and have finally found a dr. willing to do one. He has had seizures for years but developed grand mal seizures and we need to get the eeg done. We have been told to try HBOT therapy for seizure control but can not do it without a baseline eeg done. Will let you know how it goes! I think what you are doing for your daughter is wonderful! We also take our son to PB as a treat as everyday life for him is such a struggle! He has made such gains from his trips to Universal I can not say enough about how wonderful a place it is! How is your daughter doing now? Hope all is well!

 

[bubba's mom]

or just write it to begin with in notepad or Word or something, then paste when you're done (right??? I believe that would work)

well, I guess you COULD do it that way...but it's easier to originate in the "reply" box on the DIS (and keep copy on notepad) because you can insert smilie icons and pictures while you go along on the DIS, whereas, if you originate TR in notepad, you have to go back and insert...pia!

 

[bellebud]

well, I guess you COULD do it that way...but it's easier to originate in the "reply" box on the DIS (and keep copy on notepad) because you can insert smilie icons and pictures while you go along on the DIS, whereas, if you originate TR in notepad, you have to go back and insert...pia!

aha! never thought of that! how true! and it's funny how much those smilies *add* to a post (even though i don't use them as much as i'd like to). btw, i've read your trip reports, and i LOVE them! all your pics, etc, are wonderful! your ds is so cute too! thanks for the advice on the spidey bkfast!

 

[dsmom]

Hi FeeFeeWhite - I know exactly what you mean! We were there last week and the resort was at 100% for the Rock the Universe event but it never felt crowded. IOA was a madhouse on Saturday(we spent a lot of time at the resort).

 

[bubba's mom]

aha! never thought of that! how true! and it's funny how much those smilies *add* to a post (even though i don't use them as much as i'd like to).

btw, i've read your trip reports, and i LOVE them! all your pics, etc, are wonderful! your ds is so cute too! thanks for the advice on the spidey bkfast!

and you're welcome

 

[bellebud]

Thanks for the advice Bubba'smom- I am working on it now!

Hi Bellebud! I don't mind you asking at all. Our son is 9 years old. He is pretty severely autistic and also has epilepsy. We have tried for YEARS to get an eeg done on him- too long a story to go into- and have finally found a dr. willing to do one. He has had seizures for years but developed grand mal seizures and we need to get the eeg done. We have been told to try HBOT therapy for seizure control but can not do it without a baseline eeg done. Will let you know how it goes! I think what you are doing for your daughter is wonderful! We also take our son to PB as a treat as everyday life for him is such a struggle! He has made such gains from his trips to Universal I can not say enough about how wonderful a place it is! How is your daughter doing now? Hope all is well!

dsmom - glad to hear you found a doc willing to do the eeg! we had been through a few docs - hard to find the right one sometimes. i remember a cm telling me once how disney (and i'm sure universal is the same way) brings out things in autistic children that just being at home doesn't, and how wonderful it is for the children (and their families). he had personally seen many autistic kids there do things that their parents said they never did before (initiate a hug, etc, etc). It's wonderful!

My dd has been seizure free for 4 years, which we're so grateful for! we took her off meds last year and held our breath.

she and my ds also have a totally unrelated genetic condition that affects the skeletal muscles - they have too much potassium in their bodies and their symptoms, when they have an 'attack' as we call it, can range from mild muscle aches and/or weakness, to total temporary paralysis. So we deal w/ this too, which isn't too bad in young children, but will get worse for them as they become big kids and teens and continue to be bad throughout life, then gets a little better later in life. but dh has it and knows how to deal w/ it, so that helps. and it's "usually" not life-threatening, but can be (why do the doctors think that will make me feel better?)... anyway, I just always feel like since they go through so much, i have to tip the scales back w/ fun things, kwim?

let us know how the eeg goes... is it scheduled?

 

[dsmom]

Hi Bellebud- It's wonderful your daughter has been seizure free for so long! I hope one day to get David off of seizure medicine(the side effects stink!) It's always nice to have a trip for the kids to look forward to isn't it? The PB resort is the first resort that David has felt at home in. The last trip he actually cried when we left! That was a big first for us!